Sunday, 6 December 2009


More clingy Fishy today. Little Fish woke at eight and begged not to to go to Scramblers (Sunday School). All through breakfast, all through getting dressed, all through a tantrum about not wanting tights and pants just trousers, the constant refrain of "I stay with you in church today, Mumma, please". And eventually a compromise, and even some excitement about this being her last ever time at Scramblers, and lots of talk about how I'd pick her up again afterwards and she'd have lots of fun.

She consented to being pushed to church, again on the understanding it would be the last time she couldn't take her powerchair, and with lots of fretting about not being pushed on the grass or the bumps or the slope. And with me finally connecting the dots and realising something somewhere might be hurting. Little Fish isn't terribly helpful when it comes to identifying pain - she tends to grab her toes and knees and tell me they are sore, but since she doesn't actually have any feeling in them I'm not convinced. And she'll deny pain in places which obviously do hurt sometimes as she's worried I'll want to touch them to see how much they hurt. Not that I spent my life poking her sore bits with a stick, but when sore bits are also mankily disgusting discharging bits I do spend a fair bit of her life poking around cleaning them up. Not pleasant.

So we get to church, and we drop Mog off, and collect a junior friend to help push Little Fish. And then the door opens, we all go to walk through it, and a lady on the other side rushes in, fails to observe Little Fish in her wheelchair, and does a beautiful somersault over the top of her. With three of us catching her to slow her landing I'm thinking human bowling might catch on - more children in knee-high wheelchairs is all it would take. The lady is, thankfully, fine - just annoyed and embarrassed. Little Fish however is unhurt but disintegrating. We make it halfway to Scramblers and have to abandon wheelchair to junior friend and carry her back into church. Where she spends the service sitting beautifully quietly on my lap and on friend's lap, making eyes at everyone in our row, and evilly tickling me during the prayers. Monstrous child.

Very cuddly, very snuggly, and very quiet - she's always a cuddle monster but the quiet bit is definitely unusual.

Home then, and a quiet girl making loudish demands for lunch. Which she then promptly refused to eat. A run into Oxford to return the Sleep Study kit to hospital. A grump at the hospital when all the free parking was filled, mostly with taxis and non-disabled-badge-displaying cars. And then another grump when the out of order lift was still out of order. A third grump when no one responded to our requests to be let onto the ward (finally let in by a parent from a different ward), another when we then stood outside the second locked door buzzing politely; several staff visible at the desk but not apparently able to click the "open door" button beside them. More grumpiness as we walked through the first ward onto the respiratory ward, and then stood at the desk waiting to be acknowledged by the nurse sitting on the other side of the desk. Note to anyone who does sit the other side of the nurse's station/hotel reception/customer services/anything else frontline - I don't expect your full attention instantly, but a little tiny bit of eye contact or a "could you hang on a sec please?", anything you like as long as you acknowledge our existence whilst you finish your task would be greatly appreciated. Offering to help open the doors as I pushed two girls back out of the ward would've been appreciated too, but I know how busy you were so I'll let that one go.

Back down to the bus, tantrums from Little Fish as I took the parking ticked out of the machine and didn't wait for her to do it herself. More screams as I strapped her into her car seat, and then a big shout from me as she attempted to pull Mog's wheelchair over sitting beside her.

And then a click of the mood switch, and all smiles and cuteness again as we drove off looking for a recycling point. Four big cardboard boxes full of smaller boxes. We had a deal with one of our carers who lived in an area which did take card but wouldn't take glass or batteries. It worked well until she left, and now cardboard is taking over my life.

Big recycling bit closed on Sunday. Three smaller places have banks for bottles, cans, clothes, even tetra packs (must remember where that one is for future reference) but no skips for cardboard. We leave Oxford, drive past our house to Tesco, where there is a cardboard skip. Three actually. All full to overflowing. We drive home, cardboard still filling the bus, and Little Fish throws a tantrum when I refuse to unload the cardboard and store it in our damp garage.

Into our house and she's all smiles again, but needing cuddle cuddle cuddle until bedtime. The girls watch High School Musical, and Little Fish decides Troy looks like a friend's teenage son. Apparently she likes this boy "acos he very nice". I have visions of T and LF doing some kind of High School Musical wheelchair dance, which leads me to picture LF in future school productions, and then onto a picture of her still glued to my hip age 16, so I stop that line of thought and wonder if T can dance instead.

Bedtime, and Little Fish starts fretting about not wanting to go to school tomorrow. And at the same time telling me all about what she thinks her friends are doing and her TAs are doing and how school is waiting for her and how yummy her school dinners are. And then again reminding me that she doesn't want to go.

She doesn't look ill, she doesn't feel ill. She may be in pain - she did seem to brighten up a little after taking some paracetamol - but then she brightened up about 2 minutes after taking it, and I'm pretty sure it doesn't work that fast. She says she needs to see the doctor but only when we talk about her going to school or Scramblers or somewhere else. She wants to be out and in, busy and calm, and whatever's going on it's clearly bothering her a lot. I'd just like to know whether it's a lurgy, a general end of term tiredness, or something more emotionally draining.

She sat on the potty tonight and drilled holes in her knees with a bolt from the armrest. No feeling in her knees, so nothing there to tell her not to do so. When she was younger I used to have to keep her in tights or she would scratch away at her thighs to make pretty patterns with the blood. "I got to make spots on my knees acos I poorly." Hmm - does she mean illness is more convincing if there are spots, or does making spots make her feel better?



Doorless said...

OOh! I would have loved to see that lady tumbling! How funny!\Poor LF. I hope you get it sorted out soon. I agree something may be hurting! This just is not like her!

Alesha said...

So sorry that LF is feeling so poorly. I know it is frustrating.

Isaac's been running about 1 degree of temp every other day for a week now. Just enough for him to be limp and quiet, but not enough to warrant a trip to the dr (especially during flu season!)

Will be praying for answers - emotional, physical, psychological - which ever it may be.



Blog Widget by LinkWithin